Far From the Tree

by Solomon, Andrew

  Contemporary historical analysis of the subject includes Daniel J. Kevles’s chapter, “‘Mongolian imbecility’: Race and its rejection in the understanding of a mental disease,” and David Wright’s chapter, “Mongols in our midst: John Langdon Down and the ethnic classification of idiocy, 1858–1924,” in Mental Retardation in America: A Historical Reader, edited by Steven Noll and James W. Trent (2004); and Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (1985).

  492 The argument that Down’s view was progressive is proposed in David Wright, “Mongols in Our Midst: John Langdon Down and the Ethnic Classification of Idiocy, 1858–1924,” in Steven Noll and James W. Trent Jr., editors, Mental Retardation in America: A Historical Reader (2004), page 102.

  493 The replacement of disabled workers in the job market by immigrants and historic classifications of intellectual impairment are both discussed in the introduction to Richard Noll, Mental Retardation in America (2004), pages 1–16.

  494 Oliver Wendell Holmes declared that “three generations of imbeciles are enough” in Buck v. Bell, 274 US 200 (1927).

  495 See Jérôme Lejeune et al., “Étude des chromosomes somatiques de neuf enfants mongoliens,” Comptes Rendus Hebdomadaires des Séances de l’Académie des Science 248, no. 11 (1959). Almost simultaneously, but independently, the gene was found by Patricia Jacobs in England; see Patricia Jacobs et al., “The somatic chromosomes in mongolism,” Lancet 1, no. 7075 (April 1959).

  496 Erik Erikson’s institutionalization of his Down syndrome child is described in Lawrence J. Friedman, Identity’s Architect: A Biography of Erik H. Erikson (1999).

  497 See Simon Olshansky, “Chronic sorrow: A response to having a mentally defective child,” Social Casework 43, no. 4 (1962).

  498 The quotation from Albert Solnit and Mary Stark comes from their article “Mourning and the birth of a defective child,”Psychoanalytic Study of the Child 16 (1961).

  499 Arthur Miller and Inge Morath’s institutionalization of their son with Down syndrome is described in Suzanna Andrews, “Arthur Miller’s missing act,” Vanity Fair, September 2007.

  500 The statement that “a Down’s is not a person” was made by Joseph Fletcher in his article (with Bernard Bard) “The right to die,”Atlantic Monthly, April 1968.

  501 See Ann Taylor Allen, “The kindergarten in Germany and the United States, 1840–1914: A comparative perspective,” History of Education 35, no. 2 (March 2006).

  502 For further information on the history and philosophy of Montessori education, see Gerald Lee Gutek, The Montessori Method: The Origins of an Educational Innovation (2004).

  503 The history of disability service and education organizations (including the Association for Retarded Citizens) and the growth of the disability rights movement are examined in Doris Zames Fleischer and Frieda Zames, The Disability Rights Movement: From Charity to Confrontation (2001).

  504 The full text of the Social Security Act of 1935 can be found at http://www.ssa.gov/history/35act.html. Matching federal funds for the care of the disabled is authorized in Section 514 (a): “From the sums appropriated therefor and the allotments available under section 512, the Secretary of the Treasury shall pay to each State which has an approved plan for services for crippled children, for each quarter, beginning the quarter commencing July 1, 1935, an amount which shall be used exclusively for carrying out the State plan, equal to one-half of the total sum expended during such quarter for carrying out such plan.”

  505 John Bowlby’s groundbreaking works include Maternal Care and Mental Health (1952), Child Care and the Growth of Love (1965), and the “Attachment trilogy”: Attachment (1969), Separation: Anxiety and Anger (1973), and Loss: Sadness and Depression (1980).

  506 The establishment of the President’s Panel on Mental Retardation in 1961 is chronicled on pages 83–86 of Edward Shorter, The Kennedy Family and the Story of Mental Retardation (2000); see also Fred J. Krause’s official history, President’s Committee on Mental Retardation: A Historical Review 1966–1986 (1986), at http://www.acf.hhs.gov/programs/pcpid/docs/gm1966_1986.pdf.

  507 See Eunice Kennedy Shriver, “Hope for retarded children,” Saturday Evening Post, September 22, 1962.

  508 See Edward Zigler and Sally J. Styfco, The Hidden History of Head Start (2010).

  509 The quoted passage comes from §504 of the Rehabilitation Act of 1973. For the full text of the law, see http://www.access-board.gov/enforcement/rehab-act-text/title5.htm; for more information in layperson’s language, see the website of the National Dissemination Center for Children with Disabilities, http://nichcy.org/laws/section504.

  510 New York State’s Statewide Early Intervention Program is described in the booklet The Early Intervention Program: A Parent’s Guide, at http://www.health.ny.gov/publications/0532.pdf; the state’s comprehensive evaluation and intervention standards are promulgated in Demie Lyons et al., “Down syndrome assessment and intervention for young children (age 0–3): Clinical practice guideline: Report of the recommendations” (2005).

  511 For more information on early intervention, see Dante Cicchetti and Marjorie Beeghly, editors, Children with Down Syndrome: A Developmental Perspective (1990); Demie Lyons et al., “Down syndrome assessment and intervention for young children (age 0–3): Clinical practice guideline: Report of the recommendations” (2005); Marci J. Hanson, “Twenty-five years after early intervention: A follow-up of children with Down syndrome and their families,” Infants & Young Children 16, no. 4 (November–December 2003); and Stefani Hines and Forrest Bennett, “Effectiveness of early intervention for children with Down syndrome,” Mental Retardation & Developmental Disabilities Research Reviews 2, no. 2 (1996).

  512 This passage is based on my interview with Elaine Gregoli in 2005.

  513 YAI/National Institute for People with Disabilities organizational website: http://www.yai.org.

  514 For discussion of the history of reform in the education of disabled children, see Richard A. Villa and Jacqueline Thousand, “Inclusion: Welcoming, valuing, and supporting the diverse learning needs of all students in shared general education environments,” in Down Syndrome: Visions for the 21st Century, edited by William I. Cohen et al. (2002).

  515 IDEA is also known as Public Law 94-142. For more information on this legislation, see US Congress, House Committee on Education and the Workforce, Subcommittee on Education Reform, Individuals with Disabilities Education Act (IDEA): Guide to Frequently Asked Questions (2005).

  516 Michael Beérubeé argues for the universal benefits of inclusion on pages 208–11 of Life as We Know It (1996).

  517 This passage is based on my interview with Betsy Goodwin in 2004 and subsequent communications.

  518 For further discussion of the “Baby Doe” legislation, see Kathryn Moss, “The ‘Baby Doe’ legislation: Its rise and fall,” Policy Studies Journal 15, no. 4 (June 1987); and H. Rutherford Turnbull, Doug Guess, and Ann P. Turnbull, “Vox populi and Baby Doe,” Mental Retardation 26, no. 3 (June 1988).

  519 Peter Singer condones infanticide of profoundly disabled infants in his essay “Taking life: Humans,” on pages 175–217 of Practical Ethics (1993); see also his book Rethinking Life and Death: The Collapse of Our Traditional Ethics (1994). Disabled individuals respond to Singer’s pronouncements about the value of their lives in Not Dead Yet’s “NDY Fact Sheet Library: Pete Singer” (at http://www.notdeadyet.org/docs/singer.html; and Cal Montgomery, “A defense of genocide,” Ragged Edge Magazine, July–August 1999.

  520 The mother whose doctor suggested that she was being “defensive” by expressing satisfaction with her relationship with her Down syndrome child was quoted in Bryony A. Beresford, “Resources and strategies: How parents cope with the care of a disabled child,” Journal of Child Psychology & Psychiatry 35, no. 1 (January 1994).

  521 Marca Bristo’s response to Peter Singer’s philosophy occurs in Cal Montgomery, “A defense of genocide,” Ragged Edge Magazine, July–August 1999.

 
; 522 The quotation from Adrienne Asch and Erik Parens comes from their essay “The disability rights critique of prenatal genetic testing: Reflections and recommendations,” in Prenatal Testing and Disability Rights (2000); the quotation that follows comes from Adrienne Asch, “Disability equality and prenatal testing: Contradictory or compatible?,” Florida State University Law Review 30, no. 2 (Winter 2003).

  523 Leon Kass sets forth his objections to prenatal diagnosis in his essay “Implications of prenatal diagnosis for the human right to life,” in Intervention and Reflection: Basic Issues in Medical Ethics, edited by Ronald Munson (2000).

  524 The quotation from Janice McLaughlin (“Mourning the choice a woman is compelled to make . . .”) comes from her paper “Screening networks: Shared agendas in feminist and disability movement challenges to antenatal screening and abortion,” Disability & Society 18, no. 3 (2003).

  525 My source for estimates of the numbers of abortions following prenatal diagnosis of Down syndrome, and the numbers of prenatally diagnosed DS babies born annually, is Brian Skotko, “Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers,” American Journal of Obstetrics & Gynecology 192, no. 3 (March 2005).

  526 The quotation from Tierney Temple Fairchild’s doctor (“Almost everything you want to happen will happen”) occurs on page 81 of Mitchell Zuckoff, Choosing Naia: A Family’s Journey (2002).

  527 The quotation from Tierney Temple Fairchild comes from her article “The choice to be pro-life,” Washington Post, November 1, 2008; see also her speech “Rising to the occasion: Reflections on choosing Naia,” Leadership Perspectives in Developmental Disability 3, no. 1 (Spring 2003).

  528 Memoirs of parents of children with Down syndrome include Willard Abraham, Barbara: A Prologue (1958); Martha Nibley Beck, Expecting Adam (1999); Michael Beérubeé, Life as We Know It (1996); Martha Moraghan Jablow, Cara (1982); Danny Mardell, Danny’s Challenge (2005); Vicki Noble, Down Is Up for Aaron Eagle (1993); Greg Palmer, Adventures in the Mainstream (2005); Kathryn Lynard Soper, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (2007); Mitchell Zuckoff, Choosing Naia (2002); and Cynthia S. Kidder and Brian Skotko, Common Threads: Celebrating Life with Down Syndrome (2001).

  529 This passage is based on my interview with Deirdre Featherstone and Wilson Madden in 2007 and subsequent communications.

  530 David Patterson discusses the genetic phenomena that give rise to such a wide variety of manifestations in Down syndrome in his chapter, “Sequencing of chromosome 21/The Human Genome Project,” in Down Syndrome: Visions for the 21st Century, edited by William I. Cohen et al. (2003).

  531 One study finding that people with Down syndrome are generally agreeable is Brigid M. Cahill and Laraine Masters Glidden, “Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities,” American Journal on Mental Retardation 101, no. 2 (September 1996).

  532 For more on psychopathology in DS, see Ann Gath and Dianne Gumley, “Retarded children and their siblings,” Journal of Child Psychology & Psychiatry 28, no. 5 (September 1987); Beverly A. Myers and Siegfried M. Pueschel, “Psychiatric disorders in persons with Down syndrome,” Journal of Nervous & Mental Disease 179 (1991); Dennis Eugene McGuire and Brian A. Chicoine, Mental Wellness in Adults with Down Syndrome (2006); and Jean A. Rondal et al., editors, The Adult with Down Syndrome: A New Challenge for Society (2004).

  533 The quoted study, finding that people with Down syndrome experience considerable emotional difficulty, is Elisabeth M. Dykens, “Psychopathology in children with intellectual disability,” Journal of Child Psychology & Psychiatry 41, no. 4 (May 2000); see also Elisabeth M. Dykens, “Psychiatric and behavioral disorders in persons with Down syndrome,” Mental Retardation & Developmental Disabilities Research Review 13, no. 3 (October 2007).

  534 The sexual abuse of disabled individuals occurs not only at the hands of caretakers and nondisabled predators but also at the hands of other disabled individuals, especially in group settings; see Deborah Tharinger, Connie Burrows Horton, and Susan Millea, “Sexual abuse and exploitation of children and adults with mental retardation and other handicaps,” Child Abuse & Neglect 14, no. 3 (1990); Eileen M. Furey and Jill J. Niesen, “Sexual abuse of adults with mental retardation by other consumers,” Sexuality & Disability 12, no. 4 (1994); and Eileen M. Furey, James M. Granfield, and Orv C. Karan, “Sexual abuse and neglect of adults with mental retardation: A comparison of victim characteristics,” Behavioral Interventions 9, no. 2 (April 1994).

  535 Behavioral problems and parenting stress are discussed in R. Stores et al., “Daytime behaviour problems and maternal stress in children with Down’s syndrome, their siblings, and non-intellectually disabled and other intellectually disabled peers,” Journal of Intellectual Disability Research 42, no. 3 (June 1998); and Richard P. Hastings and Tony Brown, “Functional assessment and challenging behaviors: Some future directions,” Journal of the Association for Persons with Severe Handicaps 25, no. 4 (Winter 2000).

  536 For a recent review of progress in gene therapy for Down syndrome, see Cristina Fillat and Xavier Altafaj, “Gene therapy for Down syndrome,” Progress in Brain Research 197 (2012).

  537 The main promoter of multivitamin regimens—aka orthomolecular treatment—and the target of most of the referenced criticism was Henry Turkel (1903–92), whose treatment incorporated vitamins, antihistamines, and diuretics; see Henry Turkel, “Medical amelioration of Down’s syndrome incorporating the orthomolecular approach,” Journal of Orthomolecular Psychiatry 4, no. 2 (2nd Quarter 1975). Papers critical of supplementation include Len Leshin, “Nutritional supplements for Down syndrome: A highly questionable approach,” Quackwatch, October 18, 1998, http://www.quackwatch.org/01QuackeryRelatedTopics/down.html; Cornelius Ani, Sally Grantham-McGregor, and David Muller, “Nutritional supplementation in Down syndrome: Theoretical considerations and current status,” Developmental Medicine & Child Neurology 42, no. 3 (March 2000); Nancy J. Lobaugh et al., “Piracetam therapy does not enhance cognitive functioning in children with Down syndrome,” Archives of Pediatric & Adolescent Medicine 155, no. 4 (April 2001); W. Carl Cooley, “Nonconventional therapies for Down syndrome: A review and framework for decision making,” in Down Syndrome: Visions for the 21st Century, edited by William I. Cohen et al. (2002); and Nancy J. Roizen, “Complementary and alternative therapies for Down syndrome,” Mental Retardation & Developmental Disabilities Research Reviews 11, no. 2 (April 2005). For more information on growth hormone, see Salvador Castells and Krystyna E. Wiesniewski, editors, Growth Hormone Treatment in Down’s Syndrome (1993).

  538 See Rolf R. Olbrisch, “Plastic and aesthetic surgery on children with Down’s syndrome,” Aesthetic Plastic Surgery 9, no. 4 (December 1985); Siegfried M. Pueschel et al., “Parents’ and physicians’ perceptions of facial plastic surgery in children with Down syndrome,” Journal of Mental Deficiency Research 30, no. 1 (March 1986); Siegfried M. Pueschel, “Facial plastic surgery for children with Down syndrome,” Developmental Medicine & Child Neurology 30, no. 4 (August 1988); and R. B. Jones, “Parental consent to cosmetic facial surgery in Down’s syndrome,” Journal of Medical Ethics 26, no. 2 (April 2000).

  539 The National Down Syndrome Society sets forth the organization’s position on facial normalization surgery in “Cosmetic surgery for children with Down syndrome,” at http://www.ndss.org/index.php?option=com_content&view=article&id=153&limitstart=6. Mitchell Zuckoff also discusses the subject in Choosing Naia: A Family’s Journey (2002).

  540 This passage is based on my interview with Michelle Smith in 2004.

  541 The percentage of instances of Down syndrome that arise from spontaneous genetic mutation comes from D. Mutton et al., “Cytogenetic and epidemiological findings in Down syndrome, England and Wales 1989 to 1993,” Journal of Medical Genetics 33, no. 5 (May 1996). For a recent review of DS genetics, see David Patterson, “Genetic mechanisms involved in the phenotype
of Down syndrome,” Mental Retardation & Developmental Disabilities Research Reviews 13, no. 3 (October 2007).

  542 For statistics on termination of DS pregnancies I have relied upon Caroline Mansfield et al., “Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review,” Prenatal Diagnosis 19, no. 9 (September 1999). Mansfield came up with a 92 percent rate, which has been the standard number for many years. A recent meta-analysis, however, suggests that Mansfield’s estimate is inflated, and that the abortion rate is somewhat less than that; see Jaime L. Natoli et al., “Prenatal diagnosis of Down syndrome: A systematic review of termination rates (1995–2011),” Prenatal Diagnosis 32, no. 2 (February 2012).

  543 Figures on life expectancy in Down syndrome come from David Strauss and Richard K. Eyman, “Mortality of people with mental retardation in California with and without Down syndrome, 1986–1991,” American Journal on Mental Retardation 100, no. 6 (May 1996); Jan Marshall Friedman et al., “Racial disparities in median age at death of persons with Down syndrome: United States, 1968–1997,” Morbidity & Mortality Weekly Report 50, no. 22 (June 8, 2001); and Steven M. Day et al., “Mortality and causes of death in persons with Down syndrome in California,” Developmental Medicine & Child Neurology 47, no. 3 (March 2005).

  544 The study finding that more than a quarter of respondents would not choose a cure for DS if one was available was described by Karen Kaplan, “Some Down syndrome parents don’t welcome prospect of cure,” Los Angeles Times, November 22, 2009. Kaplan was quoting and reporting on a paper presented by Angela Inglis, Catriona Hippman, and Jehannine C. Austin, “Views and opinions of parents of individuals with Down syndrome: Prenatal testing and the possibility of a ‘cure’?,” abstract published in Courtney Sebold, Lyndsay Graham, and Kirsty McWalter, “Presented abstracts from the Twenty-Eighth Annual Education Conference of the National Society of Genetic Counselors (Atlanta, Georgia, November 2009),” Journal of Genetic Counseling 18, no. 6 (November 2009).